What information are you collecting?

As part of the Cleft Collective Cohort Studies, we are collecting genetic, environmental and psychological information, as well as asking to link up to families’ medical and educational records. We are also running a Speech and Language sub study. For more information about this study, visit our speech and language page.

Biological samples and Environmental information

Although some of the underlying risk factors for cleft lip and/or palate (CL/P) have been identified there is still a lot more to learn about what causes cleft and how this affects the development of children with cleft, both now and in the long term. This arm of the Cohort Studies aims to investigate environmental and genetic risk factors of CL/P. It will thus attempt to address two of our key questions: ‘What caused my child’s cleft?’ and ‘Will my child be OK?’

For more information about this aspect of the study, please visit our Biological and Environmental page.

Psychology

“It’s not just surgery and fixing, it’s all the stuff that goes with it” – mother of two children born with cleft lip and palate.

Having a baby born with a cleft can be a stressful and emotional time for families. By asking the parents and children in our study questions about their wellbeing, we hope to identify the key difficulties that families may experience, and to develop and improve the support that is available to anyone affected by cleft lip/palate.

For more information about the Psychological aspects of this research, please visit our psychology page.

Medical and Educational records

A great deal of information is collected and stored about all of us in our official government records. This information gives a detailed picture of many aspects of our life, such as our health, the medications we are prescribed by doctors and our education. The Cleft Collective can use this information alongside the information families give us to improve our understanding into the causes of cleft and longer-term effects. Information can only be released with the families’ permission. As with all the information we collect, information from other sources will be kept completely confidential in accordance with General Data Protection Regualtion (GDPR). This aspect of the study is optional.

Medical records include those held by families’ general practitioner (GP). For example:

• Details of visits to the doctor and any treatment given
• Hospital attendances; why families were there and what happened whilst they were there
• Eye tests and dental records

The child’s educational records are held by the Department for Education. This includes information about:

• The child’s achievements at school (Key Stage Assessments and GCSEs in England, Wales and Northern Ireland and 5-14 levels and Standard Grades in Scotland)
• The characteristics of pupils in the child’s school (ethnicity, special educational needs, absences)

The CRANE database

The CRANE Database collects information about all children born with cleft lip and/or cleft palate in England, Wales and Northern Ireland. This database was set up by the Department of Health in 2000. This information is stored on a secure online CRANE IT system managed by the CRANE team, based at The Royal College of Surgeons of England. Information held by CRANE includes:

• Details of the type of cleft the child was born with
• Patient name and postcode
• Further detail on what data is held by CRANE can be found via their data dictionary

With the parents’ consent, we would like to access the child’s information on the CRANE database. This will help us to get as much information as possible about the child’s cleft without having to ask the parents directly. For more information about CRANE, take a look at their website.

Speech and Language

Children and families who are recruited to the Birth Cohort study, and who have a child who was born with a cleft palate will be invited to participate in this study which is focusing specifically on early speech and language development in children born with cleft palate. The aim of this study is to look at the factors which are linked to progress in speech and language development. It is hoped that this information will tell us more about how to improve speech and language development in children born with cleft palate.

For more information about this study, visit our speech and language page.

What will happen to the information you collect?

All data will be stored securely and anonymously in accordance with GDPR.
Participants will receive information about the progress of the research through newsletters, social media and the website. Anonymised research findings will be reported in professional publications, meetings, conferences and newsletters.
To receive updates about our research and opportunities to get involved in research activity, please visit our involvement page.

It's not just surgery and fixing, it's all the stuff that goes with it.

Mother of two children born with cleft lip and palate.